The ethics and emotions of neonatal care

The ethics and emotions of neonatal care; Treating babies
We can usually save them, but should we?

Montreal Gazette – Aug 21, 2012, Page:A8

RAHUL K. PARIKH

On my first day as a pediatric resident at Cedars-Sinai Medical Center in Los Angeles, I was assigned to the neonatal intensive care unit (NICU). I was in awe of it. Three (and later four) large rooms were lined with clear plastic incubators, and inside each, a baby. Many of them were extremely premature.

Some were small enough to fit in the palm of my hand and weighed barely a pound. Their little chests heaved with each heartbeat. Their skin was paper-thin. Ventilators breathed for them; intravenous lines travelled to their bodies to nourish them; sensitive electronics tracked every subtle change in their vital signs.

NICUs are the triumph of modern medicine’s investment in technology, pharmacy and know-how. They exist to finish nature’s work because 500,000 times a year – more than anywhere else in the industrialized world – a baby is born prematurely in the United States. The most precarious are born at the margin of life: somewhere between 23 and 26 weeks of gestation, or what’s called the limit of viability.

That limit has changed dramatically over the past half-century. In the 1960s, when the first NICUs opened, premature infants had a 95 per cent chance of dying. Today, they have a 95 per cent chance of survival. This has, in the words of one neonatologist, Dr. Nicholas Nelson, changed our perception of the premature baby as “a patient to be cared for, rather than an object to be pitied.”

Now we face a difficult choice, one not unlike that facing physicians who take care of adults near the end of their life: whom to fight for and whom to let go. The decision says volumes about how we have come to regard the tiniest, frailest of patients.

Saving lives this young is not benign. Survivors of extreme prematurity have frequent, and often severe, complications during their time in the NICU. In the worst cases, these children will suffer lifelong disabilities: cerebral palsy; severe visual impairment that thick glasses and eye surgery can only partially correct; scarred lungs that will leave them reliant on oxygen tanks; intellectual and behavioural problems that put them well behind their peers.

Partly because prospects for these children can be so dark, the American Academy of Pediatrics suggests not resuscitating babies born before 23 weeks, while babies born after 26 weeks are usually resuscitated.

Between 23 and 26 weeks, the risks remain high but survival improves with each week. This range is treated by the pediatrics organization as a grey zone, and doctors and parents must make the hard decision about whether to try to resuscitate a baby without firm guidance.

The circumstances are rarely ideal. Neonatologists walk into a patient’s room, day or night, amid the intense activity of obstetricians and nurses trying to manage labour. It’s an emotional, tense and uncertain time not conducive to detailed discussion or reflection. Unsurprisingly, then, these life-or-death decisions are made inconsistently.

In a 2005 study, researchers at McGill University surveyed 165 pediatric and obstetric residents in four Quebec medical centres about resuscitating babies born between 23 and 26 weeks. Some residents, the researchers found, worked at hospitals with an aggressive culture of resuscitation. Other facilities embraced far less aggressive approaches: Even at 26 weeks, when a premature baby’s chance of survival is more than 70 per cent, residents at these medical centres indicated that they would attempt resuscitation only about half the time. Pediatricians in the U.S. also have highly variable approaches to resuscitating premature babies, studies suggest.

Parents hold to a far more consistent ethos. A 2001 study by researchers at McMaster University in Hamilton, Ont., showed a significant majority believed that attempts should be made to save all infants, irrespective of condition or weight at birth. Just six per cent of health professionals said the same. Older studies in the U.S. have suggested parents here feel much the same.

Why this gap between parents and some doctors, even as medical technology makes it possible to save increasing numbers of premature babies? Perhaps doctors who are reluctant to intervene at all costs are all too familiar with – and wary of – the possible consequences. As two neonatologists, Dr. William Meadow and Dr. John Lantos, put it: “It used to be that all of cerebral palsy was God’s fault.” Now roughly half of cases are our fault, they wrote, and “that is hard to live with.”

And many doctors realize the ordeal of resuscitation won’t be limited to the babies. The NICU is also incredibly difficult for parents.

In 2005, Dr. Annie Janvier, a neonatologist in Montreal who researches decision-making in medically uncertain circumstances, was just over 23 weeks pregnant when she went into labour. She gave birth in the very hospital where she practised neonatology. “My baby was in the ‘optional’ category, and we had to make a decision,” she recalled.

They asked the team to take full measures. Their little girl, whom they named Violette, went right to the NICU. She would have a very rocky course, at one point becoming so sick that Janvier and her husband decided to withhold therapy. The little girl rallied, then nearly succumbed to an infection.

All of this had a deep effect on Janvier – but not the sort you’d expect. “I loathed visiting the neonatal intensive care unit while she was unstable,” Janvier wrote in an essay about Violette’s first weeks. “I hated being encouraged to participate in her care.”

Not bonding too strongly with a premature or sickly newborn might be a protective mechanism for parents, Janvier now believes. After all, for most of human history, premature babies died. But bring in modern medicine, set the expectation that every baby has a fighting chance and we’ve authored a new relationship with these children – patients now, not objects – that we’re still struggling to confront.

Doctors might take the same approach. As a resident, the occupants of those little incubators, it seemed to me, were more fetus than baby, one interchangeable with the next. We didn’t even give them names, just a medical record number, or we would refer to them by their sex – “Jones, Baby Girl.” It was easier to round when their parents weren’t there. You could just get the night’s numbers, do a quick exam and move on. It all helped me stay detached.

Many studies show a vast majority of extreme preemies go on to live satisfying and productive lives. Violette left the NICU when she was 4 months old, and today she is a happy, healthy girl. Still, when the end of life is so close to its beginning, there are no easy days in neonatology. Doctors do the best they can under tremendous pressure and the spectre of emotional and clinical uncertainty. It’s a reminder that despite the fact that we have the best technology powering the NICU, medicine remains a fundamentally human – and therefore imperfect – endeavour.

Dr. Rahul K. Parikh is a pediatrician in Walnut Creek, Calif., and a contributing writer for Salon.com.